Service provision in end of life dementia care ( version 1:0)
Research type
Research Study
Full title
What services influence the care of people with dementia in the last year of life?
IRAS ID
178626
Contact name
Jennifer Todd
Contact email
Sponsor organisation
Kingston NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Dementia is one of the most important health and care issues the world faces. Patients with dementia and their carer’s highlight a key priority to be good quality care at the end of life, but in reality the final year of life can be punctuated by acute events, hospital admissions and suboptimal symptom management. There is little evidence of what services influence the end of life care in dementia.
Princess Alice Hospice has seen a year on year increase in the number of people with dementia referred to the service for Specialist Palliative Care (SPC). Specialist Palliative Care is the total care of patients with progressive, advanced disease and their families from a multidisciplinary team who have undergone training in the management and support of this patient group. SPC is mainly provided by hospices but there are also SPC teams within hospitals. From April 2013 to March 2014, the Hospice received 223 referrals for people with a dementia diagnosis and had 161 deaths with dementia. Referral patterns suggest that patients with dementia appear to be referred to the Hospice late in the illness trajectory.
This will be a retrospective exploratory study in 2 NHS Trusts and the Hospice to explore the everyday lives of 20 people with dementia in the last year of life (ten of whom will have been referred to SPC services) using 2 methods. 1) data will be collected from deceased patients medical notes (for example acute events, admissions, treatment, physical or psychological issues) over the last 12 months of life and 2) interviews with their bereaved carer’s to build a detailed picture of the last year of life. Data sources will be combined to understand more about the everyday life of people with dementia in the last year and what services do or could influence their care.REC name
London - Queen Square Research Ethics Committee
REC reference
15/LO/0864
Date of REC Opinion
1 Jun 2015
REC opinion
Favourable Opinion